Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Friday, May 29, 2009

Happy Birthday Greg!



Today my sweet husband turned 39. Greg is a Texas fan, thus the cake. His birthday wasn't the greatest as he's been having some problems with his blood pressure and had a nuclear stress test today. We haven't heard anything about the results, yet. Hopefully all will be well. We need things to get better this year.
Last we heard, our cousin is doing well. Thanks for your thoughts and prayers for her and her family.
As you can see from the pics below, we went to the YMCA today. We have a very nice one here. There is an indoor pool/slide/lazy river/kids area. It's the first time we've been this year. I'm sure we'll be there a lot this summer - it's a good place to be in the water and away from the intense heat that comes with these Oklahoma summers.
I talked to a friend today that I don't see frequently. She asked how we were doing. You know, some days are better - some days aren't. I think it's getting easier to deal with everything, but I still wish everything could have been different. I think I'll be wishing that for the rest of my life.
There's not really much else to write about today and no big plans for the weekend. I've been enjoying sleeping in later this week - I think the kids have enjoyed it, too. Poor little Chloe ended up having strep throat, but as you can see she's feeling fine now. The antibiotics kicked in and she's back to feisty self. Hope you all have a great weekend. Love you all, jc

Carter's Frog "Tim"

Carter found this frog in our backyard before we left to go to the YMCA. He named him "Tim".

The Frog

video

After we came home from the YMCA, we worked in the backyard and Carter found "Tim" again. Here he is doing some tricks with his new friend.

Kids at the YMCA

I took the kids to the YMCA today. They had a great time playing in the water.

YMCA

video

Chloe had a great time at the YMCA today. It was our first trip there this year.

Wednesday, May 27, 2009

Prayers, please

We have a sweet cousin - granddaughter of Aunt Pat and Uncle Bob who sat with Maverick - named Rachel who had surgery to remove a tumor from her brain today. They don't know yet if it is malignant or not. Please keep her and her family in your prayers. They had this done in Texas at MD Anderson. Thanks. Love you all - jc

Tuesday, May 26, 2009

Taking a Breather

Pic from Carter's award ceremony last week. Mrs. Brand is his teacher. We love her. Maddie had her, too.



Here is Maddie after her award ceremony. Hers was on Friday - we checked out a little early.

I just haven't felt like blogging for the past several days. The kids had their last day of school on Friday. We were all so glad to leave for the last time this school year. We went to get a snow cone after school and when I pulled money from my pocket, I realized something was wrong. I had two fives that I received as change earlier in the day. They didn't look alike at all. One looked counterfeit. I paid for the snow cones with the real one and then we walked to the credit union next to the snow cone stand to investigate further. Sure enough, the bill was counterfeit. I asked the bank teller what I was supposed to do with it - she said I should take it to the police station. The police man who took the report said there had been a bust of some people who had been making fake fives and twenties, but there were probably still some floating around. I was lucky enough to get one of them and realize it. The kids now know where the police station is and what happens to counterfeit money (they send it to the Secret Service). We'll call it the first educational field trip of the summer.

Saturday, Greg and I celebrated our 15 year anniversary. We went out to dinner at Paul's Place - it's our favorite steak place in town. When we finished, we both wanted to go to the cemetery. The kids stayed with their Aunt Jan and Uncle Bob. We went to Walmart after leaving the cemetery to get some flowers to take to his grave. I've decided I'm going to have to get over my dislike for artificial flowers. We walked in and went to the Memorial Day aisle - you know the one. I've never had to walk it before. We started down it and I just started crying. Greg took me away from it and said I wouldn't have to go down it again. We bought real flowers and Greg picked out an artificial arrangement so I could use the vase that sticks in the ground. I figure the real flowers will last a little longer if they're in water. I'm planning on going to Hobby Lobby soon to find some realistic-looking flowers to make an arrangement. After that, we came back home and had a pretty somber evening. Maddie took this pic of us before we left for the evening.



Sunday was three months since his death. I tried to stay busy most of the day. Maddie and I went that evening to a dance recital. She and Chloe both started out in dance this school year, but they both stopped before Christmas due everything that was going on. Maddie is ready to start back up next year. She loves to dance. I'm not sure about Chloe. She may or may not.
Here's a pic from one of Carter's recent ball games. He's having a great time.


Monday the kids and I went to the cemetery. Maddie said, "It doesn't even look depressing out here." There were so many flowers. Yes, probably 95% of them were artificial, but they did brighten the place up. We saw a family that had a baby a few plots down from Mav and the mom was making a flower arrangement right there in the vase. There were three other kids there and the mom was actually their great-aunt who had adopted them all. We talked a bit and the baby that died was a twin to one she had there that day. The little girl looked to be about five and the lady was still tearful when she talked about it. Of course I cried when I told her about Mav. I think it just goes to show it doesn't get easier. You just deal with it differently. When we got home, Greg pitched a tent in the backyard and the kids played until late. I cooked out hamburgers and hot dogs on the grill and started cleaning up when we finished. Greg has been talking to me about painting. He knows how much I love it and has been encouraging me to pick it back up. I think he knew I was having a hard time when he saw me flitting about trying to find things to do. He said, "Do you have a canvas?" I said, "Yes." He said, "Go paint for awhile." I got out my paint box, palate, turpenoid and canvas. I looked for my Nora Jones CD, but wasn't able to find it so I borrowed Maddie's ipod and put "Sunrise" by Nora on repeat. That CD is one of my favorites and is the music I used to paint to a lot. Usually I have a sketch or picture or something when I start, but I had nothing. I just started painting how I felt. I cried a while and then was so completely relaxed. Painting has always been almost intoxicating to me. I can completely lose track of time. I was finished with my painting in an hour and a half. I felt much better when I finished. Maddie took this picture of me finishing up.


We went to bed a little late last night, and little Chloe woke up a lot. She was running a fever this morning. Doesn't she know she can't be sick on the first official day of summer break? We just stayed around here. She perked up for a while, but was puny again at bedtime. Carter practiced his Michael Jordan moves outside with his basketball today. Maddie, Chloe and I (when Chloe perked up) made banana bread and went outside in the backyard to tend to Maddie's container garden. We have a few things to finish up then I'll post some pics of it. All her plants are growing really well and she enjoys taking care of them. Oh, and we all read this morning. That's my goal for the summer - to have reading time everyday. So far, so good. Love you all, jc



P.S. I added some more things to the list below - and changed the font on some. They didn't show up in the right-sized font for some reason.

Thursday, May 21, 2009

Ideas to help those who have lost a child

Another heart mom from Texas asked me what the most thoughtful thing someone has done for us after Mav died. I thought that question deserved a good answer. We had so many thoughtful things, though, I'll have to make a list. I'm sure over time I'll think of others and have to come back and update it. I think this might help others have tangible ways to help those who have lost a child.

The day that Mav died, two friends sent beautiful flowers to the house.

Of course the wonderful food started pouring in; Greg and I couldn't eat, but my kids and family still needed to.

Our neighbors brought lots of paper products - paper plates, towels, toilet paper, napkins; as well as trash bags and plastic ware . I thought that was a great idea. I didn't feel like doing dishes and I certainly didn't want to go to the store to buy those things. We had lots of friends and family in and out and it was nice to have everything available.

Our sweet school secretary sent teddy bears to the kids.

Our school sent ice - the good kind of crushed ice - over in an ice chest.

There is a family-owned gas station here in town, and anytime we go they give the kids bubble gum. Their family brought over a huge tub of bubble gum and candy for the kids. If you're a mom, you know that anyone who does something sweet for your kids gets high marks.

I had two dear friends fly in from out-of-state. They were both at my disposal. They listened, cried with me, drove me around, watched the kids, helped me pick out a dress, etc., etc. Their presence meant the world to me. Another drove several hours to be with me right after Mav's death.

We received so many cards. The sentiments were so thoughtful. I loved getting letters that told me how Mav impacted their life. We received cards from people we've never met. One sweet person wrote a nice note and included stickers for the kids. An aunt sent us stamps. Some sent money, restaurant gift cards, and we even received a grocery store gift card. Everything was appreciated. Honestly, through all of this we never knew how we would financially make it. We didn't. It was God, working through all these amazing people that helped us make it through.

My girl friends arranged lunch for us the day of the funeral. Our church sent food for the evening.

A friend from church made the funeral handouts for me. I couldn't stand to see those depressing ones they usually have.

My gifted photographer friend and her husband came to my house and backed up all my photos - I was so afraid our computer would crash and we would lose them. They also did the slide show and took pics at the funeral and graveside service. I still need to post the one of the helicopters in formation over the graveside service. It is truly amazing.

The staff at the hospital made hand and foot prints in clay. Those are so precious to me.

Friends from work did so much for us. They donated PTO to me. That helped cover our insurance costs while I wasn't working. They bought Christmas gifts for the kiddos. I know these are before he died, but they were so appreciated. I'll probably make another list of How to Help Those with Children in the Hospital. They came to see us immediately after Mav's death and helped us pack up all of his belongings.

The funeral home director was a good friend. He brought their family's moses basket to the funeral home for us to use. I couldn't bear the thought of seeing him in that little casket.

I had another friend who showed up on my doorstep the Sunday after the funeral. Everyone had left. I was lonely. Her timing was perfect. If she would have called I may have discouraged her from coming. I'm glad she came unannounced. For me, having company and people to be around has been very helpful.

Greg has a friend that lives an hour away - he had bar-b-que delivered to our house.

A few weeks after Mav died, we had a friend bring sundae stuff and ice cream over. The kids loved it.

An aunt gave us a framed picture of Mav's hand that she had taken. I love it.

I loved the potted hydrangea we received from one of Mav's nurses. The card was so touching. It said that the blue flowers reminded her of Mav's big blue eyes.

The friends and acquaintances that shared their stories of loss and listened to us - and continue to - are priceless.

Going out to the cemetery and seeing fresh flowers left on his grave was so touching.

One friend brought over several canvases. She knows I love to paint.

One sneaky friend paid for a couple of my hair appointments.

One family sent money for the purchase of Gideon Bibles in Mav's memory.

Some brought over books on loss - for us and the kids.

We had one friend who knew she couldn't go to the funeral because she has lost babies herself. She volunteered to substitute in Carter's class so his teacher could go.

I think any personalized gift would be appreciated by someone who has lost a child - like a necklace or Christmas ornament with the child's photo. Gifts of some one's time or money to a cause that would benefit other children in similar circumstances are wonderful.

I recently received an email that a home school coop had a moment of remembrance for Mav. That was very touching.

Our church organized a blood drive in Mav's memory. Seventy-two amazing people showed up to donate and sixty-two of those were eligible to donate that day. Isn't that amazing? The people who worked the drive said they usually only have about 20 or so show up at a church sponsored blood drive.

I know I'm missing so many. I'll add to this as I think of more. I may try to put a link to this on the side or at the top at some point. It's getting late now and I need to get some sleep. Love you all, jc

Wednesday, May 20, 2009

Yesterday, Carter had his award ceremony at school. Maddie and Chloe sat in to watch - I think Maddie just wanted to get out of class! We're so proud of Carter (and the girls, of course). He's been through so much this school year and has really done well, all things considering. I planned on leaving the kids at school after the ceremony - it was held at 11:45 and finished at 12:15. I caved to peer pressure, though. Many of the kids were being checked out, so I checked mine out as well. They both went to friends houses to play and swim. They had a good time.

After the ceremony we were standing in the area with the kids and teachers talking and taking pictures. I saw one little boy walk up to one of Carter's friend's mother and tell her that his parents weren't able to come that day. She looked at him and said,"Aww, what a bummer. Would you like me to take a picture of you?' I didn't hear his response and was involved in another conversation at the time, but I did see him smile really big. I thought, "Wow, what an amazing person. She just made his day." I wondered if I would have even thought to make that offer. It made me think about what's important to my kids. My presence - mentally and physically. It also made me think that small things can truly make a difference in someone else's life. I know that's a bit deep for the second paragraph, but that scenario made me think.

I took Maddie's swimsuit to her at our friend's house. After we left, Chloe and I were alone in the vehicle. I asked her where she wanted to eat. She said, "McDonald's!" I asked her, "Are you sure? Is there anywhere else you'd rather go?" She said, "No." I replied, "Not even Benedict Street?" She squealed, "YES! BEN STWEET!" What a smart girl. Coffee and a cookie are certainly better than a play place any day.

Later in the day I passed two different funeral processions. They really hit me and made my heart hurt. All I could think of was the pain someone else was going through. That really sucks.

When we made it home, I took mail from the mailbox and went to the den where Greg was sitting. I received a big envelope from the University of Southern Alabama. I told Greg who it was from and opened it. It was an acceptance letter to their Pediatric Nurse Practitioner Program. We both teared up. I'm glad I got in, but I know why I'm able to go. In January I was planning on being Mav's personal nurse in the fall. Now I'll be going back to school. It's a bittersweet opportunity, but I'm looking forward to it.

I awoke this morning thinking about PNP school and Mav. I went to a friend's house to help her paint her kitchen one of my favorite colors, red (my other favorites are pink and black). There were three of us and we had some good "girl-time." I took a phone call and for some reason while I was on hold I remembered a dream I had last night. It was disturbing. I've heard it's common to have nightmares after the death of a child, but I hadn't had any bad dreams at all. The dreams I've had about Mav were all good. I haven't evn had any about him since the first week after his death - until last night. It wasn't directly about Maverick, but stop here and skip to the next paragraph if you don't want to hear about it. This is your last chance... I dreamed Greg and I were going to a place to pick out his headstone and we followed a man into a room filled with bassinets all decked out with beautiful bedding. There were rows and rows of them and they were all filled with what appeared to be dead babies. I was bawling in my dream. I went up to look in one and the baby was actually made out of some kind of ceramic. They were all a type of grave marker at this indoor cemetery. Pretty strange. I wonder how my mind fashioned that one.

Oh, if you're wondering, the kitchen looks marvelous.

When we got home today I had a sweet letter in the mail that proves to me God's timing is perfect - even when we don't understand the circumstances surrounding it. Wishing our special friend all the best.

I'll post some pics tomorrow. I need to download my camera. Love you all, jc

Monday, May 18, 2009

I have a date - not the fun kind...

I have a date - not the fun kind - it's June 23rd. That's the day I'll have my heart cath. They're going to try to fix my ASD with a Helex Septal Occluder. For my medical friends, the website is www.goremedical.com/helex if you're curious. My defect is on the upper end of the size range for this device - it's 18 - 20mm. In the reading it says the largest size defect should be 18mm, but in the study the largest defect corrected was 24mm. From what I've read, the rim can be deficient in about 25% of the space and it will still work. I haven't heard a percentage of how deficient mine is, I know the anterior aspect is deficient, and I think one side may be as well. I'm going in on June 10th to meet with Dr. Sperraza who will be placing this. I have some questions for him. It will be done at Children's in the cath lab. If they place it, I'll stay overnight at Presby. If they don't, I should go home the same day. All the reading I've done on these say they're really safe. I really hope this works.

Not alot of other news going on. Today was the last Monday of school for Maddie and Carter! I'm ready for them to be out for the summer. Love you all, jc

Sunday, May 17, 2009

The Weekend

We were pretty busy this weekend. Friday after school we took the kids to OKC and went to a park. We took the long way home and stopped by Greg's older brother's grave in Harrah. He and a friend drowned while fishing at Lake Texoma when Greg was a junior in high school. Greg's mom is from Harrah, so we drove by the house she grew up in. Quite the history lesson for the kids. On the way home we went by and looked at granite for Mav's grave. It's kind of hard to decide. We'll be looking at it for the rest of our lives and we want it to be perfect.

Saturday was a fun day for Carter. One of his friends invited him to a private football clinic held by Adrian Peterson - his friend's parents bought it at a fundraiser. For those of you who don't keep up with sports, he used to play football for OU. Now he plays for the Minnesota Vikings and is an amazing running back from what I hear. I'm not much of a sports fan, but I had heard of him. There are a few pictures of the clinic below. He had a great time. They went through some drills and scrimmaged, then he signed autographs and answered questions. He was a really nice guy and was very good with the kids. We so appreciate the invite. I'm sure that will be something Carter will always remember. Later that night Carter asked me what football players eat because he wants to be a football player. He is my picky eater. The only vegetable he eats is raw carrots, and french fries - if they count. I thought, "Hmm, this is my chance." "They eat eggs, meat, lots of vegetables and fruit." We talked about it for a while. Then he said, "Mom, I thought about it, and I'm the only one in our family who doesn't eat salad. I want some salad when we get home." WHOO-HOO - thank you Adrian Peterson! Carter ate salad when we got home. Greg was wondering what was going on when he asked for it.

Saturday afternoon I went grocery shopping and when I came home to put stuff in the freezer I didn't have enough room. I decided to get rid of some milk - I haven't cleaned out all of it, yet. I had given some of it away, but there was still a ton of it in the freezer. I really can't explain why I haven't gotten rid of it sooner; well, yes I can. I guess I have an emotional attachment to it. All the bottles had his name and the date and time on them. I pumped through January - he was never even able to make a dent in it. It was hard for me to quit, though. I felt like if I stopped, I was giving up on him. It was a bit more difficult to continue after we came back to Oklahoma. When I wasn't with Mav, I was with the other kids and it took up some of that precious time. So, if you are one of my freezer hook-ups keeping that milk in your deep freeze, you may dispose of it. Thanks for keeping it for me.

Today we all went to church. It was Senior Sunday - as in high school senior - a couple of the young men did the music and it was amazing. Later in the service the pastor interviewed some of the youth who had gone through a thirty-week discipleship class. What focused young people they were. I hope our children are as dedicated as they are. Seeing how mature these young people are in their faith helped me refocus.

This evening was Family Fun Night at our church. The kids had so much fun. The pictures are from this event. I saw a lot of friends I hadn't seen in a while. It was nice to visit with everyone. The question about nurse practitioner school came up a few times. One of my friends that applied with me called them last week and they said we will know the end of May or first week of June. I don't even think I ever put the name of the school on here. It is the University of Southern Alabama. The program is online except for 3-5 days per year that have to be spent on campus. You arrange your clinicals in your area. It won't be long before I have an answer.

We went to Mav's grave this evening and someone had placed a flower or Fourth of July spray at all the babies' graves. I thought that was very nice.

Once again, I've rambled long enough. Love you all, jc

Carter and some bunnies

Face Painting for the Girls

Saturday, May 16, 2009

Thursday, May 14, 2009

What would I do without them?


Seriously, what would I do without our kids? They keep me going and make me laugh everyday.
The morning started out a bit on the wrong side. I woke up at 7:35. That's the time we usually leave the house to go to school. I had the kids hurry up and get dressed - I stayed in my pjs and put on some flip-flops and didn't even brush my teeth or comb my hair. I told them I would stop by the donut place and get them a donut on the way to school. Maddie went in and I promise you it took 15 minutes to get donuts today. The line was almost out the door. With donuts in hand we drove to the school. I'm getting ready to turn into the parking lot and Maddie comments on how many cars are there today. "Oh, no. Someone has their awards ceremony today," I say. Maddie urges me to stay parked until she finds out if it is one of theirs - so that I can come in and watch if it is... "Maddie, honey, I still have on my pajamas. I can't come in looking like this. Hopefully it's not one of yours." She finally agreed that I was a bit under dressed, so she and Carter went into school and I drove off. It wasn't for either of their classes, thankfully.
I made it back home and got ready. The exterminator came at 9:30 - we've had ants really bad this year. When he left it was about time to leave to go to OKC. Chloe and I went and had a nice lunch with some of my Mediflight friends. We made it back in town in time to pick up the kids from school. Carter went to a friend's house for awhile and had had baseball practice later this evening. Coming home from baseball practice, Carter's commenting about the mosquitoes and how the bug spray wipes didn't work for him. He and Maddie were talking about how they work and decided that the bugs are supposed to leave you alone because they don't like the smell. Carter says, "Well, that mosquito must have held his breath, because he stung me anyway." I had to laugh. Then he was talking about the practice which was actually a scrimmage. He played catcher at one point in the game. He said, "Mom, it was hard being the empire." I told him he was the catcher and he continued to disagree. Then I had to tell him it was really "umpire," but he was still the catcher. It was an amusing ride home.
When we got home, the kids had some ice cream and took showers. I gave Chloe a quick bath. She loves her towel that's in the pic above - that pic is one of my favorites from last summer. We got it when she was a baby from one of my friends and she always has to have it. When she gets out of the tub, I wrap her up in it and she always says, "Hold me like a baby." Always, except for the past two nights... I think she's getting big and outgrowing it. I wrote about times like this in one of my other posts - how you always remember the firsts, but not the lasts. I think we're about to the last of those words. How sad. We went into her room and she was looking at herself in the mirror with the flower on her head. She said, "I'm growing." I said, "Yes, you are."
Well, I've babbled long enough. I need to go spend some time with Greg. He cleaned the carpet in the living room this evening - yeah! Hope you all have a good night. Love you all - jc

Wednesday, May 13, 2009

Sweet Maverick

What a sweet boy. This was sometime after his first surgery.

Chloe in Mav's Carseat

I haven't posted in a few days because I just didn't know what to post. The past few days haven't been the greatest for us with Mother's Day on Sunday, then yesterday Mav would've been eight months old. I think about all the things that should've been going on if things would've gone as expected. He would be cruising, crawling, babbling. If he was anything like Carter, he would've been trying to throw a ball. The days seem to be getting a little easier, but I still miss him so much. The evenings and nights are still more difficult. The house is quiet and there's not much going on at night, so I have lots of time to think. I am glad that he is not hurting and that he's in the most perfect place of all right now, but that still doesn't stop my tears.

I took the above picture of Chloe on Monday. She loves her babies and loves to play with the car seat we had for Mav. She's been mentioning him a bit more lately. Yesterday she came up to me about to cry and said, "I weally miss Maverick." She was carrying one of her babies at the time. I said, "I know, I do, too. What made you think about him?" She said, "I want to feed him and change he diaper." Monday she mentioned him and asked where he lived and why he didn't get to come home. I said that he was sick and he had to stay at the hospital and then he died. She asked, "Who killed him?" Wow. I told her, "Honey, he was just really sick."

Today some of the girls and I went to lunch. Ms. Marla is moving away soon and we all wanted to see her before she left. She is the life of the party and keeps us all laughing. You will be missed by many, Marla.

Tomorrow I'm going to OKC to see some of my Mediflight people. One of the girls I used to work with is moving out of state, so we're telling her "goodbye." It will be good to see everyone.

Well, I guess I'll go for now. The littlest one just crawled up on my lap. She took a late nap today, so we may be awake for awhile. She's talking away... Love you all, jc

Sunday, May 10, 2009

Maddie's card

Happy Mother's Day

We had a pretty good day today. I awoke to find the sign posted. Greg and the kids got me a pretty white turquoise necklace, bracelet, and earrings. Carter gave me a present from school earlier this week - a cute flower pot with dirt and worms in it (the edible kind). Chloe gave me a flower that she potted at Mother's Day Out. Maddie saved hers until today. She made a cute scrapbook style card with our picture on it. We went to lunch at Santa Fe Steakhouse here in Shawnee. After that, we went to the Mav's grave. I'm so thankful those videos showed up yesterday. At least if I don't have him here, I have some more memories to look back at. One thing I've learned is you can't take too many pictures or videos. You never know when they may be all you have left...

We didn't go to church this morning. We did our back-up plan and watched Lifechurch.tv yesterday evening. They just started a series on Elijah. There was a quote on the sermon notes, and I know I'm not going to get this exactly right and I can't pull it up right now, but it was something like, "God will break you before he will use you." I don't remember who it was from either, I'll check later this week when it's available. Anyway, it was a very good sermon. I think Greg and I are about as broken as you can get right now. Hopefully, brighter days are ahead.

I want to thank my mom, my stepmom, and my grandmas today. I have some strong and amazing women in my life who have helped me make it this far. I think this Mother's Day, I appreciate being a mom a bit more. I'm a bit less uptight when the kids make mistakes - like the fingernail polish on the carpet. I'm a bit more patient when they're being pokey. I try to enjoy every moment. I appreciate my kids more. I appreciate Greg more. I owe it all to Mav. Thanks sweet boy, momma loves you. Hope you all had a Happy Mother's Day. Love you all, jc

Mav's Grave

The Sign

Pic of Maddie

Maddie, Chloe, and I went to Benedict Street the other day for lunch. Look at that cookie, yum. We had a good day.

Saturday, May 9, 2009

Busy Days

We've been busy the past few days. Thursday I went to OKC with two of my friends. That afternoon I talked with Dr. Ward (peds cardiologist in OKC). He took a look at my TEE (heart echo) that was done while I was pregnant with Mav and said there is a new device that they may be able to fix the ASD with. He said the chance was better than 50/50 - probably like 60-70%. Now, you know I'm not a believer in statistics, but if there is the slightest hope of fixing this ASD without having an open-heart surgery, I'm all for it. This device would be placed in the cath lab at Children's in OKC. The same place Mav had his done. Dr. W's scheduler is supposed to be calling me to set something up for late June or July. If it doesn't work, at least I've tried the less-invasive route.

Friday Maddie stayed home with me and Chloe. The Little Olympics was that day, and there were only going to be a few people from her class at school. I had heard they weren't going to be doing much, so why make her go? Carter still had class, so he went. He's had plenty of days off this year when Maddie went, so all is well. Friday evening Carter went to a friend's house to play and Maddie was babysitting. I was cleaning up the kitchen and Chloe was very quiet. I was starting to wonder where she was and then I heard it, "Mom, wook, I paint my fingew nails." Those dreaded words, never meant to be heard from a three-year-olds mouth. I said, "Chloe, did you make a mess?" She said, "I jus got some on da table." We went into the living room to look and she said, "Woops, I got some on da cawpet." Nice turquoise nail polish. I told her to leave it alone and not to touch it. Unfortunately, I've been through this before and know the best thing to do is let it dry and cut it out. Our carpet is pretty long, and usually the polish just sits on the very top. I said something about cutting it out of the carpet, and she became very interested and wanted to get the scissors. I told her only mommy could cut the carpet. We had a discussion about nail polish as well. I was starting to clean her up and I thought I should take a picture. Upsetting, but priceless.


We're just here with Chloe again this evening. Maddie is at a friend's house and Carter went with his friend to The Lion King. It's on stage in OKC.

So far we have no big plans for tomorrow. I'm digging my heels in the ground to try to stop it from coming. Mother's Day is just a reminder that I'm missing one of my babies. Church here is out of the question due to the baby dedications. I'm happy for all of them, but I can't sit through it right now. We may go to OKC tomorrow or something. We'll see how we feel tomorrow.

As I was sitting here trying to upload a photo from the computer, I just got one of the best Mother's Day presents ever. I was able to pull up the videos we thought we had lost - from before Mav's birth to the first of November. I haven't been able to pull them up from the camera or from the computer before - it just showed a sign like the video had been broken. I had called a recovery company and it was going to cost between $400 and $1200 to get the videos back - if they could get them back. I called Greg in here and we watched the video from when Mav was born for the first time. Enjoy your babies tomorrow. Love you all, jc

A cute one of the kids eating worms and dirt we made the other night.

Wednesday, May 6, 2009

Honestly

This is another pic Holly sent me.

I've had better days and so has Greg. We talked tonight and he said I just need to be honest. He told me I'll share 8 of 10 things, but the two I leave out are the ones that are the most important. Mav's life, this blog, and our experience won't help anyone else going through a similar situation if I try and paint a rosy picture everyday. In fact, when I've looked at some other blogs where people have lost babies or children and they sound happy and normal and talk about how great the world is it makes me mad. Maybe mad is not the best term, but I think, "Are you real?" I'm not talking about throwing a pity-party for myself everyday, and I'm not looking for sympathy. I'm just using this to express my feelings. Maybe someone going through the same thing may realize they're not crazy. Most people want you to get over it and move on with your life, but most people haven't been through something like this. It makes them uncomfortable.

So, today I was so tired from not being able to go to sleep until late that I came home from taking the kids to school and crawled back into bed. Chloe and I slept until about 10:30. Greg didn't sleep at all last night, so he tried to go to work this morning and ended up back at home as well. After we got up, I went through some mail and wrote out a few bills. I had some phone calls to make - still trying to get the correct insurance information for some of Mav's hospital bills. I'm hoping this took care of it. If I'm being honest here, I didn't even take a shower today.

This afternoon I received a phone call today from my Aunt Jeanne. She is a Methodist minister in New Jersey. She always has good advice for me. She said that I have been on her heart a lot lately. She asked how I was doing. I told her it's just day-by-day. She asked me if I felt like praising God or listening to praise music and singing. I answered, "No." I told her I wasn't even able to listen to music in my car until about a month ago. We talked for awhile and she told me I should do it anyway. I'll try. She asked me about praying and I told her I can say prayers with the kids, but the only thing I can usually pray right now is "Lord, help me." She, too, told me to be honest and to write down how I'm getting through this. She, like many others, encouraged me to write a book. She said, "You connect with people through your pain." She advised me to give in my area of need and said that would help with healing. She said, "You get into positions with your talents, but it's your character that keeps you there" then went on to tell me how much character we have built going through this with Maverick. We talked for quite awhile and we both cried. She told me someday I would understand why - that God would reveal it. She's really an amazing woman.

I can honestly say before Mav came along, I never understood the love of mothers of sick or handicapped or mentally challenged children. I knew they loved their children, but usually thought of how difficult their lives were. How did they keep going, how did they not lose it? Now I understand. It's almost as if it's easier to love these children. I don't really know how to explain it. I never even saw Mav as a "special needs" baby. He was simply our baby and I would do whatever it took to get him home with us.

Mother's Day is coming up this weekend. I'm really not even looking forward to it. At church, we're having baby dedications. Hmmm... I'm very happy for all you that have happy, healthy babies; but I know if I'm there I'll just be thinking about how we should've been up there with Mav, and I'm sure I would start bawling.

Back to today... I called the Ronald McDonald family area at Children's Hospital this afternoon to find out about the rooms. All the ones they currently have are taken, but they are talking about adding more rooms. She took my name and number and said she would call when they get to that point. The family or organization pays for the entire build-out of the room, which is usually around $10,000. I think we could raise the rest somehow. I'm still processing all that. I told the kids we would go up there one day this summer and take a tour.

I was so glad the rain finally stopped this afternoon. Carter was able to go to tennis camp. Maddie decided to join in at the last minute. They both enjoyed it.

This evening we witnessed a baby bird take its first flight. We have a hanging basket with a fern in it by the back door. We've watched as the nest was built, filled with eggs, then filled with tiny furry creatures, and now there are little birds taking off from it. The kids always like to check on them as we're coming or going. It's been pretty neat to watch.

Well, it's late, once again. I suppose I should try to get to bed. Love you all, jc

Tuesday, May 5, 2009

Lunch with the Girls

Here some of us are at lunch today. It seems every week some can make it and others can't, but we always have a good time. Have I mentioned lately what great friends I have? Seriously, I'm a lucky girl. My friends help me laugh.


Yesterday evening I had a friend bring by a big tub of clothes for Chloe for this summer. It was like Christmas! Friends, these are nice clothes. This friend of mine is always dressed to kill, and her daughters are too. I'll be posting some pics of her in these I'm sure. Thank you so much, G - she loves them.


This morning I had a chiropractor appointment and I've been released - well, I'm just supposed to go back in a month for a check. My neck and shoulders feel so much better and I'm not having many headaches either. After that, Greg left for work and I took Chloe to Mother's Day Out. I went by the post office and then went to lunch with the girls. We can sit and talk for hours. We keep each other laughing and it gets my mind on other things - at least for awhile.

The kids helped me make dinner tonight. We had breakfast, kind of. I sent Maddie into the store to get biscuits and she came out with crescent rolls, "They were on sale mom!" I guess I asked for that one with all my recent bargain shopping. So, the menu consisted of eggs, bacon, and crescent rolls. No one complained. Greg even told Maddie he likes them better, anyway. After dinner we made worms and dirt - where you make chocolate pudding and cover it with crumbled Oreos and add a few gummy worms for effect. They had fun and it kept us all busy.

No big plans for tomorrow. Chloe and I will probably try to get caught up on some things around the house. My closet is awful, but I don't know if I have the energy to tackle that project. I'm hoping the rain will stop and we'll be able to plant Maddie's veggies tomorrow. Her grandma and grandpa heard she was wanting a garden, so they brought us some very large tubs to plant them in. Carter was supposed to have tennis camp this week, but so far it's been rained out. Maybe we'll see the sun tomorrow. Love you all, jc

Monday, May 4, 2009

Baby Mav

He didn't know where to look..... Me or the mobile!!! These from today were all sent from Holly. This makes me want to say a big "Thank You" to all of you who sat with Maverick. He was so blessed to have so many people who loved him. He loved to have the attention, and to have someone there to wind that mobile! We are so blessed to have all of you in our lives.

So alert

New Mav Pic, Maddie's Heart, and Donation Info

Thank you, Holly, for sending these pics of Mav from the night you sat with him. They are great. I'm just sitting here bawling looking at these sweet pictures I haven't seen before. I love this one, too. Actually, I love them all.

We had Maddie's cardiology appointment today with Dr. Ward her heart looks good. Thank God! No structural defects. They are going to have her wear a holter monitor for about a month after school gets out to try to "catch" the episodes she's complaining of. We talked to him about my issue as well, and he's going to take a look at the echo I had before Mav was born (the TEE). I'll find out what he thinks in a few days. I talked to him about the money raised by everyone for Maverick (for the 3-D ultrasound machine). There's good news; the powers that be have approved the money for the machine - and I actually think they're getting two if I remember correctly. I asked him if the cardiology department had any other needs that would help other patients. He said they could definitely put the money to use, but thought we might want to check into the Ronald McDonald floor at Children's first. They have converted part of a floor in the hospital into an area for families. They have a few rooms - all of which have been named in memory of different children. Their families provided the funds and came up with the ideas for decorating them - from what I understand. This area was new when we were there, and I went to look at it once during the ice storm, but they were closed. I'm going to call tomorrow to find out more. We have around $2,500 that has been given and is still being held by our church, Immanuel Baptist. I so appreciate all your donations, and hope everyone who donated will be okay if this is the route we decide to take with the donations. Your feedback would be appreciated. I'm not even sure if they have other rooms left to "name", but that was just an option Dr. Ward thought we might be interested in. Most importantly, I'm glad they have the funding approved for the 3D-echo machines. That will be so nice for other babies and children.

Tonight, as we were saying our prayers, Chloe prayed for Maverick. Carter tried to "shush" her - I think to protect me. I told him it was ok. She went on to pray that I would have a good day with Maverick - she used to pray that every night - and "for anybody has to have surgee." That's surgery for those who don't speak three-year-old. After we finished and I tucked them in, I was in the hall sorting laundry and she came out of the room with a sad look on her face and said, "Mama, I weally miss Maverick." I told her I did, too. Love you all - jc

Sunday, May 3, 2009

Tomorrow

Well, here we are. Tomorrow is the beginning of another week. Tomorrow morning Greg and I will be taking Maddie to see Dr. Ward - he was Mav's cardiologist at Children's in OKC. She has been complaining about her chest hurting and feeling funny for more than three years. I took her to the pediatrician three years ago to have it checked out and they did an EKG and all was well, so nothing further was done. After finding out about Mav but before he was born, I mentioned Maddie to Dr. Ward and he thought it sounded reasonable to have her checked out. So, that's what tomorrow is. She'll have a heart echo and will see him in the morning at his Mercy clinic. I'm concerned she might have an ASD. I hope I'm wrong. If she does, I suppose it is better to find out now than when she is 37... I'm praying that all goes well; however, nothing would surprise me at this point.

It was a pretty uneventful weekend. Carter went to a sleep-over last night, Maddie baby-sat, and Greg, Chloe and I just stayed around here. We slept in this morning. I've been catching-up on my sleep - finally. I went to the cemetery this afternoon. I can't tell you how difficult this has been. We both keep going over things - why did things go so wrong?

I'll let you all know how tomorrow goes. Love you all, jc

Friday, May 1, 2009

Finding My Place, Awareness, and Web Sites

I've been searching around on the computer tonight for a place that I can help. A place to join and help make a difference in the lives of babies and children affected by congenital heart defects. I haven't found my spot, yet, but I'm looking. Here is a statistic I thought you might find interesting.

In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Here is a petition I signed tonight. I copied it from another site. It would be wonderful if you'd take the time to sign it, too. There are many interesting facts listed below.

Petition for Global Media Awareness of CHD

Please visit this site:http://www.gopetition.com/petitions/media-awareness-for-chd.html
And sign this petition:Media Awareness for CHD ( Congenital Heart Defects )

Background (Preamble):
*Congenital heart defects are America's #1 birth defect.
*Nearly one of every 85 babies is born with a CHD in the US.
*Congenital heart defects are the Number 1 cause of birth defect related deaths.
*This year almost 40,000 babies will be born with a congenital heart defect in the US.
*4,000 of them will not live to see their first birthday.
*91,000 life years are lost each year in this country due to congenital heart defects.
*The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year. *Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
*More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
*There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
*In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, & complications of surgery…about 51% of deaths caused by CHD are children under the age of 1 year.
*Early diagnosis is the key to survival!
*For nearly 40 years, newborn screening programs have provided an important public health service by identifying newborns with metabolic, hematologic and endocrine disorders as well as hearing loss. But did you know there is also a test that could identify a congenital heart defect immediately? This painless, non-invasive test is an echocardiogram and it could dramatically increase the survival rate for children born with CHD.

Due to these alarming facts, we the undersigned urge the Media to start helping in raising Awareness whether it will be my magazine and newspaper articles, books, info shows and commercials.

Thank you so much for taking the time to read this petition and care so much to sign it. It it truly being appreciated.WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !If you would like to learn more about CHD, please visit the following great pages :

http://www.chloeduyckmemorial.com/
http://www.hope4tinyhearts.com/
http://www.itsmyheart.org/
http://www.tchin.org/
http://www.carepages.com/
http://www.savinglittlehearts.org/
http://www.childrensheartfoundation.org/
http://www.babyheart.org/
http://www.congenitalheartdefects.com/
http://www.chdinfo.com/
http://www.chdfamilies.org/
http://www.societyforchda.com/
http://www.chdawareness.org/
http://www.kentuckianalefthearts.com/
http://www.childrensheartlink.org/
http://www.thechdquilt.homestead.com/
http://www.childrenheartinstitute.org/
http://www.heartsofhopemi.org/
http://www.littlehearts.org/
http://www.riheartgroup.com/
http://www.roccosheart.org/
http://www.media-ministry.org/chd/
http://www.angelinas-friends.com/
http://www.congenital-heart-defects.co.uk/

God bless you :)*Sandra Kay,- Founder of "Matters of the Heart", and "Angelina's -Warriors of CHD Awareness"Petition:Due to these alarming facts listed above, we the undersigned urge the Media to start helping in raising Awareness about CHD. We need to educate the public and demand mandatory heart screenings for all babies in utero!Media Awareness should come in all ways, whether it will be by radio, magazine and newspaper articles, books, movies, info shows and commercials. More ATTENTION and AWARENESS has to be given to CHD by the Media NOW !We need to step in and step up to the plate for the health and future of our little ones.

Love you all, jc